Friday, June 10, 2011

How to care for the elderly?

How to care for the elderly?

A story is told of a community of Native Americans. Grandfather was becoming very old and forgetful and was really a lot of trouble to the tribe. One day, son says to grandson, “It’s time to take grandfather to meet the ancestors.”

Grandson replied, “Is he dying?”

Son says, “No, but it’s his time.”

Son and grandson put grandfather on a litter and carry him up to the high place where there were many wooden constructions decorated with feathers. There were tepees and strange bundles wrapped in animal skins, but no people. Son showed grandson how to sit grandfather up in one of the tepees. Grandson asked son, “Where are the ancestors?”

Son replied, “They are all around. They will come for grandfather shortly.”

Son and grandson began to make their way down the mountain.

Grandson says to son, “I’m really glad that you brought me with you today, Dad, because when it is your time I shall know where to take you.”

Son says to grandson, “You know what? Perhaps it isn’t grandfather’s time quite yet. Let’s go back and fetch him home to the village.”

Euthanasia is one way of dealing with Alzheimer’s disease, but most physicians do not support this as a way out, and despite the Assisted Suicide Bill regularly appearing before Parliament, it is always soundly defeated.

Although we see old age as one of the most difficult problems faced by any health care system, it is really a sign of the success of modern medicine. People used to die of infection, heart disease, pneumonia and the rest with an average longevity when I was young of 68 years; now they go on living into their 90s. They go on living until their brain breaks.

How do you deal with a broken brain living in a healthy body?

Might there be a medical solution? If there is we are probably a decade away from discovering it. About 10% of patients with dementia have a remediable condition – vitamin B12 deficiency and thyroid deficiency are the commonest causes but there are others. Perhaps another 10% have incurable dementia but also have a remediable condition such as pneumonia or heart failure that has recently made them worse. These problems should be looked for and treated. However, it is very important that these investigations are done by the primary care physicians while the patient is in his or her own home. The worst possible thing that can be done for patients with Alzheimer’s disease is to admit them to a ward of a general hospital.

When I was younger and inspecting a London teaching hospital, I was astonished to hear that 30% of the acute beds of the hospital were filled with what they called ‘bed-blockers’. These were patients for whom the hospital had done all it could and now wanted to discharge. Many of these patients had dementia and the relatives quite correctly determined that they could not cope at home. The only sensible alternative was a nursing home and to pay for this would involve selling the family home. But this was the kid’s inheritance and they were resisting the sale. They were doubly incensed because prior to the admission to hospital, Mum was managing at home reasonably well.

It is quite clear that when an elderly mildly demented patient is admitted to hospital, the disorientation involved frequently leads to an exacerbation of the dementia.

Apart from the factors I have mentioned, dementia is not really a medical problem and doesn’t have a medical solution, yet it is one of the reasons that the government gives for requiring 20% efficiency savings from the NHS in the next four years.

It is hard to credit it now, but when I was young, one woman in seven became a nurse. Of course, they didn’t all become State Registered Nurses (SRNs, what RGNs used to be called) with qualifications, but the type of nurse that we train now is a specialized creature, able to administer complicated drug regimens, to do ‘procedures’ like erecting a drip and passing a nasogastric tube. Most nurses didn’t do that and still don’t. They may be called ‘Health Care Assistants’, but the public knows them as nurses and they do the sort of tasks that nurses have always done. They wash and feed patients, they make beds, they wipe their bottoms, they take temperatures, pulses and blood pressures, they take blood samples, they dress wounds, they help patients out of bed and back into bed, and they generally make life a lot more pleasant than it would otherwise be. Many of them are also male. Quite a lot of what a demented patient needs is included in the above list. They seldom need an RGN but they do need the aid of health care assistants.

My sister works for a private company that provides these services in a person’s own home. It is funded mainly by the taxpayer and includes among its ministrations some element of entertainment like trips out and attendance at day-centers. My sister has no nursing training but she has been a mother and she has run her own small business. She knows how to organize things and is able to manage the other ‘home-helps’ as they used to be called. The point is that most people with mild dementia, or indeed mild failure of other bits of their bodies, can and ought to be helped to remain living in their own home. It is not costly to do so and it is worth the public investing in this resource. Of course, there is a place for family and church to contribute to this enterprise and there really is a ‘Big Society’ out there already doing it.

My mother is 91 and although she has all her marbles, she is inevitably slowing down and a little off her legs. My siblings do her shopping, tend her garden and clean her house. We do our part as much as we can, living much further away. A lady from her church lives around the corner and, although in her 80s, is a great help. Other people from her church provide transport to three church meetings every week. For Mum, life is worth living because of the support she gets.

Unfortunately, however good the support, dementia patients cannot always be kept in their own home. Often the main carer is a spouse of the same age and when the spouse gets ill someone must take over. If the children have the responsibility of caring, the care is often shared out unequally. High flying sons are too busy and their trophy wives don’t see why they should be involved. They may provide some money, but often this lifestyle is only maintained on tick. Other children may live too far away to get involved. On many occasions it is the youngest daughter who happens to live locally who has to give up her job or neglect her own family. Resentment is easily engendered.

For many the answer is a nursing home. But how to pay for it? In Scotland and Denmark the governments have decided that the general taxpayer should pay. Scotland has the advantage of a generous subsidy from England and Denmark has a basic tax rate of 53%. Joan Bakewell, who was advisor on old people to the last Labour government thought that the old person should sell his or her large house to pay for it.

The Dilman report has suggested that there should be a cap of about £50,000 on how much old people should pay towards their nursing home care. If they have total assets of less than £23,000 they are currently not expected to pay anything. £50,000 barely pays for 2 years in a nursing home – the average stay for a demented patient is about 18 months. Down south and in London £50,000 can often be found from income alone. Up north £50,000 often represents a person’s total assets, house and all. However, since the taxpayer picks up the rest of the tab and the biggest taxpayers are down south, there is a sort of equality about it.

Southern Cross, the largest provider of nursing home care in the UK is in financial difficulty. It sounds as though it has made an unwise investment, but it looks as though 32,000 individuals in Southern Cross Care Homes are going to find that their nursing homes are no longer secure. Nursing Homes are usually large houses that have been converted, Sometimes several houses are knocked into one. However they could be converted into flats of be used for other purposes. This very flexibility is a danger since it is price-sensitive. With the house sale market static there is a great demand for rented properties and some landlords have felt that nursing homes are not as profitable as flats.

There does not seem to be an easy answer to the conundrum, which is perhaps why the Labour Party has cried, "No contest" and has offered to work together with the government on a joint approach. For me the lesson to be learnt is that more people are going to have to work as carers and that the qualities that these people are going to need are patience, kindness and faithfulness. Rare qualities indeed!

1 comment:

I was join next of kin to a dear friend with Alzheimer’s that died aged 85, I had been a long time friend and the son and family lived in London and daughter across the Atlantic so I was the best choice living in the same town.

She was looked after by her husband, a job that needed a lot of patience and love, they were such loving couple, when he died of cancer we had to deal with the situation.

I have wonderful memories of my daily visits to her in the old people’s home, she did not recognized me as I arrived, but once I told her who I was she was happy and relaxed, she lived in another time so we spent time planning imaginary parties, making guest list and menus etc, or weekend trips to visit her mother or endless fun activities, if I went out for 10 minutes she had forgotten I had been there so we would start all over again as if I had just arrived.

I used to have tea and sometimes Sunday lunch with all the other people in the home and enjoyed talking to them all, I talked to the daughter of an old lady one day and said how interesting conversation I had with her mother that week, she reply telling me that when she visited she never said a word. I felt very sad and unable to help.

You said “qualities that these people are going to need are patience, kindness and faithfulness”, this is quite true, patience and kindness being very important in my view, something modern days seems to have forgotten at times.

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Born in Worcester, England 1943; school at Farnborough, Hampshire 1954-62; University 1962-7 and junior doctor posts 1967-74 in Bristol; Consultant Haematologist Bournemouth 1974-2003; Professor of Immunohaematology Southampton 1986 to present. Honorary Consultant Haematologist Kings College Hospital, London, 2004-present. After 5 years of working part time researching, writing, reviewing, editing, speaking, sitting on committees, advising, answering questions and thinking, I now think of myself as fully retired apart from my role as Editor in Chief of the medical journal Leukemia Research. I was awarded the Binet-Rai medal for outstanding research in CLL in 2002 and this has been my most sucessful area of research, but I have also made important contributions in the fields of apheresis, stem cell transplantation, myeloma, myelodysplastic syndrome, antibody therapy, cytokine therapy and DNA vaccines. I was once mascot for Aldershot Town Football. Club. Married to Diane for 44 years. Four children, Karen, Richard, Angela and David.